To post this about Tourette’s

[wombatsandaplant]

After an incident on a plane the other day, I thought I’d do a post about Tourette’s in the hope that people will learn a bit more about it.

I was on a plane the other day and was ticcing as I do, (tics are what the involuntary movements and vocalisations are called). Some woman was less than impressed, she was sitting in the row in front of me, I explained why I was ticcing, she was not having any of it and kept telling me to be quiet. I was trying my hardest to be quiet, which I thought I was doing quite successfully. She complained to the air hostess, I explained to the air hostess and she was very sympathetic and told the woman there was nothing she could do as it was Tourette’s and it’s not voluntary. The woman eventually was quiet after this. I get it’s annoying to others but it’s even more annoying to me. I try to embrace though as I can’t do much else.

I have to deal with various incidents like this on a weekly basis. So I am hoping to educate you a bit so you can understand a bit more about Tourette’s.

So, Tourette’s is a neurological disorder that is inherited usually. There are rover 300,000 people in the uk living with Tourette’s. Tourette’s is characterised by involuntary movements and noises called tics. This can be anything from a shoulder shrug, to an arm flail, to a sniff or a shout. It can also mean swearing (this is called coprolalia, but only 10% of those with Tourette’s will swear (I am one of the 10%). Tics can occur in nearly every muscle in the body. Tics usually start in childhood and vary with severity, sometimes they can be worse and other times they will be better.

Vocal and motor tics (the two types of tic) can cause pain and discomfort. This is both through the premonitory urge and through doing the tic. A pre monitory urge occurs frequently but not always. This is an urge that occurs before a tic. It can be a feeling of pressure build up to a tingling sensation. Sometimes there is no premonitory urge and the tics just happen with no warning.

Tics can sometimes be suppressed for a short time, not everyone can suppress though and it can be very difficult to suppress. Think of like blinking, you can stop blinking for a short time but soon you will have to blink.

Tics can be anything. Motor tics can be anything From arm shrugging to jumping, from finger waggling to head jerks. Vocal tics can be anything from whistling to shouting, from phrases to to a hum. Some tics can be amusing. One of my favourite tics is ‘donkeys are the new unicorns’. Tics can be in context to completely out there.

If you have any questions please feel free to ask them and I’ll do my best to answer them.

Ds1's funniest tic was random exclamations of "get a watch!" he was mortified by it but he was really stressed at the time.

My daughter (10) was officially diagnosed withTourette’s a few months ago, but has clearly had it since she was about 5. It’s been really hard to get her to school at the moment as she is worried about people looking at her, talking about her behind her back and just generally staring. I’ve tried to explain they are just curious, but she’s not comfortable at all.
However, she just sang a solo really well in a school concert; singing is the one time she doesn’t tic as badly and she’s very talented, so I’m glad she’s still got the confidence to do it (she has lost confidence in so many other ways).
Although there are groups where kids can meet etc, and better access to therapy in some areas, there is very little in our area (Newport/CARDIFF).

Big shout out to all those either with TS or whose children have it!

Great post OP. 2 of my friends have kids with Tourettes, it’s always helpful to educate people about a condition so they can be more understanding.

I can’t believe people sometimes. I really, really think I can safely say that the woman on the plane was in the ‘asshole minority’. I really believe most people are genuinely not fussed. I wouldn’t have even batted an eye, OP. My youngest is on the spectrum and he has tics- not overt tics but he sort of stims and tics at the same time.
Did you ever watch Tourette’s and Me,OP? Did you think- if you did watch it- that it was a fair portrayal? Personally I loved it. For me it humanised something I didn’t know much about. It normalised it for me. I think it’s about 10 years old. It’s a Scottish documentary.

And I really hope this thread fills up fast so that you know, OP, that people from all walks of life are truly on your side and totally understanding.

Vanguard I love the documentaries with John Davidson in them, hes the adult that has it in that documentary. John Davidson is a great ambassador for tourettes. He always does good documentaries.

And thanks everyone.

My brother had Tourette's (he died when we were younger). He had mainly motor tics, and we never saw how his condition would have been in adulthood.
I am sorry you have to put up with this. People are awful.

I entirely understand your predicament, OP — I did a short training course when I was teaching a young adult with fairly extremeTourette’s and my godson has a milder version — but as I’m sure you’re all too well aware, the fact that it’s involuntary and uncontrollable doesn't assuage the hurt and shock at being called a paedophile, to use your own example. Or, in the case of a colleague of mine who taught the same student in a university setting, having him tic ‘Fat bitch!’ intermittently throughout her lectures in front of a couple of hundred people. She was an early career academic in her first term, and was humiliated and really pulled down by it.

Not his fault, obviously, and I imagine he was upset, too, but there aren’t many situations where a nervous young woman has to try to give lectures to large groups of people and maintain a professional demeanour while someone repeatedly shouts out remarks about her body and just has to get on with it because it’s not the other person’s fault, it’s a neurodevelopmental disorder, and he is a student paying fees and with a right to an education.

I’m not saying there’s anything he could have done, and obviously one feels for him, too, but sometimes ticcing in this way can be awful to be on the receiving end of.

Did you ever watch Tourette’s and Me,OP? Did you think- if you did watch it- that it was a fair portrayal?

My response (not the OP of course!) is that it was a fascinating documentary about an incredible person. In terms is it being a 'fair' portrayal of the illness, as the vast majority of people with the condition don't swear, then it wasn't fair in that sense, no. If you ask the general public about the symptoms, almost everyone will mention swearing. So whilst the programme highlighted the struggles of one person (and yes he does amazing work), it did also reinforce a stereotype which isn't the reality for most sufferers.

Fuschia I understand that it’s difficult for them, but there’s no need to threaten to punch me especially when I’ve explained. People don’t realise how hard it is for the people ticcing these horrible words and phrases. We hate it with an absolute passion, but unfortunately there’s nothing we can do. It crushes our souls when we tic these horrible things. I get that it’s hard for others too though.

Thanks for posting OP. There really should be better understanding of what you have to deal with.

I know very little about tics but my DS just developed some quite complex ones a month ago at 12 and is currently waiting for an MRI (in case it's something else - there is no family history and he's never done it before). His tics are accompanied by extreme dizziness and seeing double - is that common?

He's trying to get on with life, but really does make some things difficult. He still has a sense of humour about it which I hope he can keep.

Hi OP do you mind if I ask, in the situation where the ticcing offends others as described in the lecture situation, is it better if the person with Tourette's goes away to calm down and return, or is it worse if that happens?

Thank you for this and I'm so sorry that happened to you xx

Barbie for me it would draw attention to it and make me feel much worse and would also make the tics worse. If it got unmanageable for the person with Tourette’s they could go and calm down, but it doesn’t always work like that, it might continue at the same level anyway, it’s really hard to say,

chaotica sorry to hear about your ds. I’ve personally never had dizziness or seeing double when I tic, I don’t think it’s very common at all.

When you shout "funny comments" eg your unicorn and donkey one how do you expect people to act? Do you prefer people to ignore it? Are you offended if people laugh - at the phrase not you obviously? I'm talking about people you meet and don't know very well and strangers.

OP, no, of course there's no excuse for threatening violence! Or in fact in any way faulting someone for something which is not under their conscious control.

But you see my point -- that there are not many situations in which someone nervous and new to a job which involves public 'performance' like HE teaching simply has to grit their teeth and bear an ongoing situation in which an aspect of their appearance they're self-conscious about is drawn attention to in a negative way over and over again in public, with absolutely no way of ameliorating the situation, because it's done by a student with a disability who cannot help it.

The same student used to shout something unpleasant about my ethnic origins (I was not originally from the country where I was working), but I was a year or two into the job, almost my first academic job, and more confident. But you do end up thinking 'Does this person, even if his tics are outside his control, actually think people from my country are inferior, or do his family and friends think this, and he's picked it up?' I never taught him in small group seminars, only in big lectures, so I never got to know him and see what he was like as an individual.

The woman on the plane sounds awful.
I work with a few people who have Tourettes (My job is because of their other diagnosis not the Tourettes) and I’m often shocked by how many health care professionals (I am a HCP myself) can be so awful. I’ve heard the view that people are making it up or that it’s annoying on many occasions. Obviously the people are spoken to each and every time but it is shocking.

Fuchsia people with Tourette’s absolutely do not believe what they are ticcing, well 99% I’m sure there’s some racists and stuff Tourette’s doesn’t eliminate that. It’s often the worst thing you could possibly say in a situation and it just comes out and we feel awful about it.

Thanks wombatandaplant, that's very useful to know.

We don't really know if we should accept the diagnosis of a complex tic disorder or carry on pressing the doctors to look for other things due to the sudden onset and other symptoms. I guess we'll wait for the MRI to see if that shows anything.

Are you offended if people laugh - at the phrase not you obviously

Would you laugh if a blind person walked into a lamp post?

keep I’d rather strangers don’t laugh, like geoffrey says you wouldn’t laugh if a blind person walked into a lamp post. I don’t mind a little giggle if I laugh if I know you but strangers I don’t like laughing, it feels a bit hurtful.

Mmm wombat. I'm really surprised at anyone even asking that question to be honest. My DD was devastated when people laughed.

It also varies on the person with tourettes. Some people will not appreciate any laughter. I dont mind a little bit if I know you well or I say I had this really funny one, then it's okay with me.

Yes I agree odd question but I did open it up to questions so I dont mind them asking.